The Hidden Face of HIV – Part 1

As a journalist who writes about AIDS, I am endlessly amazed by
the difference between the public and the private face of HIV;
between what the public is told and what’s explained in the
medical literature. The public face of HIV is well-known: HIV is
a sexually transmitted virus that particularly preys on gay men,
African Americans, drug users, and just about all of Africa,
although we’re all at risk. We’re encouraged to be tested,
because, as the MTV ads say, “knowing is beautiful.” We also
know that AIDS drugs are all that’s stopping the entire African
continent from falling into the sea.

The medical literature
spells it out differently – quite differently. The journals that
review HIV tests, drugs and patients, as well as the
instructional material from medical schools, the Centers for
Disease Control (CDC) and HIV test manufacturers will agree with
the public perception in the large print. But when you get past
the titles, they’ll tell you, unabashedly, that HIV tests are
not standardized; that they’re arbitrarily interpreted; that HIV
is not required for AIDS; and finally, that the term HIV does
not describe a single entity, but instead describes a collection
of non-specific, cross-reactive cellular material.

That’s quite a difference.

The popular view of AIDS is held up by concerned people
desperate to help the millions of Africans stricken with AIDS,
the same disease that first afflicted young gay American men in
the 1980s. The medical literature differs on this point. It says
that that AIDS in Africa has always been diagnosed differently
than AIDS in the U.S.

In 1985, the World Health Organization called a meeting in
Bangui, the capital of the Central African Republic, to define
African AIDS. The meeting was presided over by CDC official
Joseph McCormick. He wrote about in his book “Level 4 Virus
hunters of the CDC,” saying, “If I could get everyone at the WHO
meeting in Bangui to agree on a single, simple definition of
what an AIDS case was in Africa, then, imperfect as the
definition might be, we could actually start counting the
cases…” The results – African AIDS would be defined by physical
symptoms: fever, diarrhea, weight loss and coughing or itching.
(“AIDS in Africa: an epidemiological paradigm.” Science, 1986)

In Sub-Saharan African about 60 percent of the population
lives and dies without safe drinking water, adequate food or
basic sanitation. A September, 2003 report in the Ugandan Daily
“New Vision” outlined the situation in Kampala, a city of
approximately 1.3 million inhabitants, which, like most tropical
countries, experiences seasonal flooding. The report describes
“heaps of unclaimed garbage” among the crowded houses in the
flood zones and “countless pools of water [that] provide a
breeding ground for mosquitoes and create a dirty environment
that favors cholera.”

“[L]atrines are built above water streams. During rains the
area residents usually open a hole to release feces from the
latrines. The rain then washes away the feces to streams, from
where the [area residents] fetch water. However, not many people
have access to toilet facilities. Some defecate in polythene
bags, which they throw into the stream.” They call these,
“flying toilets.’’

The state-run Ugandan National Water and Sewerage Corporation
states that currently 55% of Kampala is provided with treated
water, and only 8% with sewage reclamation.

Most rural villages are without any sanitary water source.
People wash clothes, bathe and dump untreated waste up and
downstream from where water is drawn. Watering holes are shared
with animal populations, which drink, bathe, urinate and
defecate at the water source. Unmanaged human waste pollutes
water with infectious and often deadly bacteria. Stagnant water
breeds mosquitoes, which bring malaria. Infectious diarrhea,
dysentery, cholera, TB, malaria and famine are the top killers
in Africa. But in 1985, they became AIDS.

The public service announcements that run on VH1 and MTV,
informing us of the millions of infected, always fail to mention
this. I don’t know what we’re supposed to do with the
information that 40 million people are dying and nothing can be
done. I wonder why we wouldn’t be interested in building wells
and providing clean water and sewage systems for Africans. Given
our great concern, it would seem foolish not to immediately
begin the “clean water for Africa” campaign. But I’ve never
heard such a thing mentioned.

The UN recommendations for Africa actually demand the
opposite –“billions of dollars” taken out of “social funds,
education and health projects, infrastructure [and] rural
development” and “redirected” into sex education (UNAIDS, 1999).
No clean water, but plenty of condoms.

I have, however, felt the push to get AIDS drugs to Africans.
Drugs like AZT and Nevirapine, which are supposed to stop the
spread of HIV, especially in pregnant women. AZT and Nevirapine
also terminate life. The medical literature and warning labels
list the side effects: blood cell destruction, birth defects,
bone-marrow death, spontaneous abortion, organ failure, and
fatal skin rot. The package inserts also state that the drugs
don’t “stop HIV or prevent AIDS illnesses.”

The companies that make these drugs take advantage of the
public perception that HIV is measured in individual African
AIDS patients, and that African AIDS – water-borne illness and
poverty – can be cured by AZT and Nevirapine. That’s good
capitalism, but it’s bad medicine.

Currently MTV, Black Entertainment Television and VH1
are running advertisements of handsome young couples, black and
white, touching, caressing, sensually, warming up to
love-making. The camera moves over their bodies, hands, necks,
mouth, back, legs and arms – and we see a small butterfly
bandage over their inner elbow, where they’ve given blood for an
HIV test. The announcer says, “Knowing is beautiful.” Get
tested.

A September, 2004 San Francisco Chronicle article
considered the “beauty” of testing. It told the story of 59
year-old veteran Jim Malone, who’d been told in 1996 that he was
HIV positive. His health was diagnosed as “very poor.” He was
classified as, “permanently disabled and unable to work or
participate in any stressful situation whatsoever.” Malone said,
“When I wasn’t able to eat, when I was sick, my in-home health
care nurse would say, ‘Well, Jim, it goes with your condition.’
That’s the way I thought,” he said.

In 2004, his doctor sent him a note to tell him he was
actually negative. He had tested positive at one hospital, and
negative at another. Nobody asked why the second test was more
accurate than the first (that was the protocol at the Veteran’s
Hospital). Having been falsely diagnosed and spending nearly a
decade waiting, expecting to die, Malone said, “I would tell
people to get not just one HIV test, but multiple tests. I would
say test, test and retest.”

In the article, AIDS experts assured the public that the
story was “extraordinarily rare.” But the medical literature
differs significantly.

In 1985, at the beginning of HIV testing, it was known that
“68% to 89% of all repeatedly reactive ELISA (HIV antibody)
tests [were] likely to represent false positive results.” (NEJM
– New England Journal of Medicine. 312; 1985).

In 1992, the Lancet reported that for 66 true
positives, there were 30,000 false positives. And in pregnant
women, “there were 8,000 false positives for 6 confirmations.” (Lancet
339; 1992)

In September 2000, the Archives of Family Medicine stated
that the more women we test, the greater “the proportion of
false-positive and ambiguous (indeterminate) test results.”
(Archives of Family Medicine. Sept/Oct. 2000).

The tests described above are standard HIV tests, the kind
promoted in the ads. Their technical name is ELISA or EIA
(Enzyme-linked Immunosorbant Assay). They are antibody tests.
The tests contain proteins that react with antibodies in your
blood.

In the U.S., you’re tested with an ELISA first. If your blood
reacts, you’ll be tested again, with another ELISA. Why is the
second more accurate than the first? That’s just the protocol.
If you have a reaction on the second ELISA, you’ll be confirmed
with a third antibody test, called the Western Blot. But that’s
here in America. In some countries, one ELISA is all you get.

It is precisely because HIV tests are antibody tests, that
they produce so many false-positive results. All antibodies tend
to cross-react. We produce antibodies all the time, in response
to stress, malnutrition, illness, drug use, vaccination, foods
we eat, a cut, a cold, even pregnancy. These antibodies are
known to make HIV tests come up as positive.

The medical literature lists dozens of reasons for positive
HIV test results: “transfusions, transplantation, or pregnancy,
autoimmune disorders, malignancies, alcoholic liver disease, or
for reasons that are unclear…”(Archives of Family Medicine,
Sept/Oct. 2000).

“[H]uman or technical errors, other viruses and vaccines” (Infectious
Disease Clinician of North America 7; 1993)

“The Western Blot is not used as a screening tool because…it
yields an unacceptably high percentage of indeterminate
results.” (Archives of Family Medicine, Sept/Oct 2000)

Pregnancy is consistently listed as a cause
of positive test results, even by the test manufacturers.
“[False positives can be caused by] prior pregnancy, blood
transfusions… and other potential nonspecific reactions.” (Vironostika
HIV Test, 2003).

This is significant in Africa, because HIV estimates for
African nations are drawn almost exclusively from testing done
on groups of pregnant women.

In Zimbabwe this year, the rate of HIV infection among young
women decreased remarkably, from 32.5 to 6 percent. A drop of
81% – overnight. UNICEF’s Swaziland representative, Dr. Alan
Brody, told the press “The problems is that all the
sero-surveillance data came from pregnant women, and estimates
for other demographics was based on that.” (PLUS News,
August, 2004)

When these pregnant young women are tested, they’re often
tested for other illnesses, like syphilis, at the same time.
There’s no concern for cross-reactivity or false-positives in
this group, and no repeat testing. One ELISA on one girl, and
32.5% of the population is suddenly HIV positive.

The June 20, 2004 Boston Globe reported that “the current
estimate of 40 million people living with the AIDS virus
worldwide is inflated by 25 percent to 50 percent.”

They pointed out that HIV estimates for entire countries
have, for over a decade, been taken from “blood samples from
pregnant women at prenatal clinics.”

But it’s not just HIV estimates that are created from testing
pregnant women, it’s “AIDS deaths, AIDS orphans, numbers of
people needing antiretroviral treatment, and the average life
expectancy,” all from that one test.

I’ve certainly never seen this in VH1 ad.

At present there are about six dozen reasons
given in the literature why the tests come up positive. In fact,
the medical literature states that there is simply no way of
knowing if any HIV test is truly positive or negative:

“[F]alse-positive reactions have been observed with every
single HIV-1 protein, recombinant or authentic.” (Clinical
Chemistry. 37; 1991). “Thus, it may be impossible to relate an
antibody response specifically to HIV-1 infection.” (Medicine
International, 1988)

And even if you believe the reaction is not a false positive,
“the test does not indicate whether the person currently harbors
the virus.” (Science, November, 1999).

The test manufacturers state that after the antibody reaction
occurs, the tests have to be “interpreted.” There is no strict
or clear definition of HIV positive or negative. There’s just
the antibody reaction. The reaction is colored by an enzyme, and
read by a machine called a spectrophotometer.

The machine grades the reactions according to their strength
(but not specificity), above and below a cut-off. If you test
above the cut-off, you’re positive; if you test below it, you’re
negative.

So what determines the all-important cut-off? From The CDC’s
instructional material: “Establishing the cutoff value to define
a positive test result from a negative one is somewhat
arbitrary.” (CDC-EIS, “Screening For HIV,” 2003 )

The University of Vermont Medical School agrees: “Where a
cutoff is drawn to determine a diagnostic test result may be
somewhat arbitrary….Where would the director of the Blood Bank
who is screening donated blood for HIV antibody want to put the
cut-off?...Where would an investigator enrolling high-risk
patients in a clinical trial for an experimental, potentially
toxic antiretroviral draw the cutoff?” (University of Vermont
School of Medicine teaching module: Diagnostic Testing for HIV
Infection)

A 1995 study comparing four major brands of HIV tests found
that they all had different cut-off points, and as a result,
gave different test results for the same sample: “[C]ut-off
ratios do not correlate for any of the investigated ELISA
pairs,” and one test’s cut-off point had “no predictive value”
for any other. (INCQS-DSH, Brazil 1995).

I’ve never heard of a person being asked where they would
“want to put the cut-off” for determining their HIV test result,
or if they felt that testing positive was a “somewhat arbitrary”
experience.

In the UK, if you get through two ELISA
tests, you’re positive. In America, you get a third and final
test to confirm the first two. The test is called the Western
Blot. It uses the same proteins, laid out differently. Same
proteins, same nonspecific reactions. But this time it’s read as
lines on a page, not a color change. Which lines are HIV
positive? That depends on where you are, what lab you’re in and
what kit they’re using.

The Mayo Clinic reported that “the Western blot method lacks
standardization, is cumbersome, and is subjective in
interpretation of banding patterns.” (Mayo Clinic Procedural,
1988)

A 1988 study in the Journal of the American Medical
Association reported that 19 different labs, testing one blood
sample, got 19 different Western Blot results. (JAMA, 260, 1988)

A 1993 review in Bio/Technology reported that the FDA, the
CDC/Department of Defense and the Red Cross all interpret WB’s
differently, and further noted, “All the other major USA
laboratories for HIV testing have their own criteria.” (Bio/Technology,
June 1993)

In the early 1990s, perhaps in response to growing discontent
in the medical community with the lack of precision of the
tests, Roche Laboratories introduced a new genetic test, called
Viral Load, based on a technology called PCR. How good is the
new genetic marvel?

An early review of the technology in the 1991 Journal of AIDS
reported that “a true positive PCR test cannot be distinguished
from a false positive.” (J.AIDS, 1991)

A 2001 study showed that the tests gave wildly different
results from a single blood sample, as well as different results
with different test brands. (CDC MMWR, November 16, 2001)

A 2002 African study showed that Viral Load was high in
patients who had intestinal worms, but went down when they were
treated for the problem. The title of the article really said it
all. “Treatment of Intestinal Worms Is Associated With Decreased
HIV Plasma Viral Load.” (J.AIDS, September, 2002)

Roche laboratories, the company that manufactures the PCR
tests, puts this warning on the label:

“The AMPLICOR HIV-1 MONITOR Test….is not intended to be used
as a screening test for HIV or as a diagnostic test to confirm
the presence of HIV infection.”

But that’s exactly how it is used – to convince pregnant
mothers to take AZT and Nevirapine and to urge patients to start
the drugs.

The medical literature adds something truly
astounding to all of this. It says that reason HIV
tests are so non-specific and need to be interpreted is because
there is “no virologic gold standard” for HIV tests.

The meaning of this statement, from both the medical and
social perspective, is profound. The “virologic gold standard”
is the isolated virus that the doctors claim to be identifying,
indirectly, with the test.

Antibody tests always have some cross-reaction, because
antibodies aren’t specific. The way to validate a test is to go
find the virus in the patient’s blood.

You take the blood, spin it in a centrifuge, and you end up
with millions of little virus particles, which you can easily
photograph under a microscope. You can disassemble the virus,
measure the weight of its proteins, and map its genetic
structure. That’s the virologic gold standard. And for some
reason, HIV tests have none.

In 1987, the New England Journal of Medicine stated
that “The meaning of positive tests will depend on the joint
[ELISA/WB] false positive rate. Because we lack a gold standard,
we do not know what that rate is now. We cannot know what it
will be in a large-scale screening program.” ( Screening for
HIV: can we afford the false positive rate?. NEJM. 1987)

Skip ahead to 1996; JAMA again reported: “the diagnosis of
HIV infection in infants is particularly difficult because there
is no reference or ‘gold standard’ test that determines
unequivocally the true infection status of the patient. (JAMA.
May, 1996)

In 1997, Abbott laboratories, the world leader in HIV test
production stated: “At present there is no recognized standard
for establishing the presence or absence of HIV antibody in
human blood.” (Abbot Laboratories HIV Elisa Test 1997)

In 2000 the Journal AIDS reported that “2.9% to 12.3%” of
women in a study tested positive, “depending on the test used,”
but “since there is no established gold standard test, it is
unclear which of these two proportions is the best estimate of
the real prevalence rate…” (AIDS, 14; 2000).

If we had a virologic gold standard, HIV testing would be
easy and accurate. You could spin the patient’s blood in a
centrifuge and find the particle. They don’t do this, and
they’re saying privately, in the medical journals, that they
can’t.

By repeating, again and again in the medical literature that
there’s no virologic gold standard, the world’s top AIDS
researchers are saying that what we’re calling HIV isn’t a
single entity, but a collection of cross-reactive proteins and
unidentified genetic material.

And we’re suddenly a very long way from the public face of
HIV.

But the fact is, you don’t need to test HIV
positive to be an AIDS patient. You don’t even have to be sick.

In 1993, the CDC added “Idiopathic CD4 Lymphocytopenia” to
the AIDS category. What does it mean? Non-HIV AIDS.

In 1993, the CDC also made “no-illness AIDS” a category. If
you tested positive, but weren’t sick, you could be given an
AIDS diagnosis. By 1997, the healthy AIDS group accounted for
2/3rds of all U.S. AIDS patients. (That’s also the last year
they reported those numbers, CDC Year End Addition, 1997).

In Africa, HIV status is irrelevant. Even if you test
negative, you can be called an AIDS patient:

From a study in Ghana: “Our attention is now focused on the
considerably large number (59%) of the seronegative
(HIV-negative) group who were clinically diagnosed as having
AIDS. All the patients had three major signs: weight loss,
prolonged diarrhea, and chronic fever.” (Lancet. October,1992)

Non-HIV AIDS, HIV-negative AIDS, No Virologic Gold standard –
terms never seen in an HIV ad.
But even if you do test “repeatedly” positive, the manufacturers
say that “the risk of an asymptomatic [not sick] person
developing AIDS or an AIDS-related condition is not known.”
(Abbott Laboratories HIV Test, 1997)

If commerce laws were applied equally, the “knowing is
beautiful” ads for HIV testing would have to bear a disclaimer,
just like cigarettes:

“Warning: This test will not tell you if you’re infected with
a virus. It may confirm that you are pregnant or have used drugs
or alcohol, or that you’ve been vaccinated; that you have a
cold, liver disease, arthritis, or are stressed, poor, hungry or
tired. Or that you’re African. It will not tell you if you’re
going to live or die; in fact, we really don’t know what testing
positive, or negative, means at all.”

GNN contributor Liam Scheff is an
investigative journalist and health advocate who’s been
published in the New York Press, LA Citybeat
and Boston’s Weekly Dig. His reporting on cell-killing
drugs like Nevirapine was recently featured in a BBC
documentary.